Arnabh’s ability to hear again…
Soon after he received his tracheostomy, our son started to be much more responsive, but we noticed he started to gaze towards movements and moving objects rather than respond to noise and voices. We found out that this was because he had ‘glue ears’. Glue ears is common in children and causes the middle ear to be filled with a sticky fluid. We had known from other parents that glue ear is also a common issue for people with myotubular and centronuclear myopathy – along with the associated hearing impairments it causes.
We received many mixed opinions from our son’s doctors – some thought he would benefit from a treatment and others thought that his hearing wouldn’t affect his communication and that it was not a primary concern, due to the fragility of the condition. But we felt that our son should be given the opportunity to hear everything, for both engaging with and enjoying the world!
First, we had very good advice to use pharmaceutical grade olive oil in his ears and in fact, his hearing did improve during this time. After seeing an audiologist at the hospital, they felt that he might benefit from grommets – a tiny tube working as a passage in the ear drum, stopping fluid retention in the middle ear canal, thus preventing glue ear formation. We felt there was nothing to lose and hoped only it would improve his hearing by having grommets.
After the ENT team (Ear Nose & Throat) inserted grommets through an operation under general anaesthetic, his hearing did improve massively. From day one, he was much happier and cheekier, and since then his communication development has been extraordinary!
(Updated 2021)
For more information please visit:
Great Ormond Street Children’s Hospital: https://www.gosh.nhs.uk/medical-information/procedures- and-treatments/treatment-glue-ear-grommets
NHS website: https://www.nhs.uk/conditions/glue-ear/
ENT UK website: https://www.entuk.org/grommets
Download this personal insight on ‘Hearing & Grommets’ here.
Important: Myotubular Trust hopes that this family’s personal perspective helps, but recommends you always consult with your usual healthcare team for professional medical advice, and for any specialist referral for treatments or procedures.
